ROCK YOUR SOCKS ON MARCH 21st
TO CELEBRATE WORLD DOWN SYNDROME DAY 2025!
It's March, and by now you should know what that means. Yes, we are talking about March 21, and on this day the world recognizes World Down Syndrome Day. Every year we try to send a reminder of what March 21 means to us and to the world.
World Down Syndrome Day (WDSD), a day to celebrate individuals who so happen to have an extra chromosome that makes them the unique, beautiful, and amazing human beings they are. WDSD was first observed in 2006 in several countries, but it was on December 19, 2011, that the United Nations General Assembly declared the 21st of March to be WDSD, making we guess you can say the first official day of observance to be March 21, 2012.
The theme for WDSD 2025, is "We call on all Governments to… Improve Our Support Systems."
The message on the UN WDSD page reads as follows:
"Everyone needs support sometimes. People with Down syndrome need support to live and be included in the community, like everyone else. Families also need support, as they are often supporting their family member with Down syndrome. Many people with Down syndrome around the world don't get the support they need. Many countries do not have support systems that meet the needs of people with disabilities and their families. Or the support systems they have do not respect the human rights of people with disabilities. Governments must make sure there is a support system, so people with disabilities are included in the community."
In the spirit of WDSD it is encouraged to wear fun/colorful socks, to bring attention to yourself in hopes of starting the conversation about why you are wearing the colorful socks. Through your conversation you can share your awareness about what Down syndrome (DS) is and share why you feel it is important to show your support.
Why do we send these reminders about March 21st? Because we have a beautiful very energetic eight-year-old daughter, named Chloe, who does have Down syndrome.
What is Down Syndrome?
What is Down syndrome (DS)? And why is it called DS? Simply put, a person without DS has 23 pairs of chromosomes, which makes up 46 chromosomes. A chromosome is a thread-like structure that packages DNA found in the nucleus of each cell. For a person who has DS, they have an extra copy of chromosome 21 (instead of two they have three copies of chromosome 21) causing them to have 47 chromosomes. Hence why the date, March 21 was chosen to celebrate WDSD, the third month (March) to reflect three copies, the day (21st) to reflect chromosome 21. There are three types of DS - Trisomy 21 (nondisjunction), Translocation, and Mosaicism. Chloe has Trisomy 21, which is the most common of the three types. Because of the extra chromosome certain growth and developmental/learning delays do occur, along with some or no facial characteristics, of course varying for each unique individual.
Why is it called DS? In 1965, the name that was previously used to describe the condition was changed to the last name of the British physician, John Langdon Down, who originally classified the condition around 1862, but did not discover it, to a group of people due to their similar facial/physical characteristics. The change was made since the prior name was thought to be offensive and even today there are some who favor the condition again be renamed, since the word "Down" can be perceived negatively. With this said, it is a condition that needed/s a name, a label, to help people understand & compartmentalize, just like the words disabled, special needs, typical, normal, and all the other labels used to describe something or someone. Since learning about Chloe's condition, we continue to see words differently. We also realize we do not like labels, because they tend to set limits, which we see no limits to what Chloe can or will be able to do. As noted on the National Down Syndrome Society website, under preferred language, in the United States the preferred usage of the condition is Down syndrome, not Down's syndrome.
Here is a link to learn more about the preferred language when referring to an individual who has DS, https://ndss.org/preferred-language
Parents/Advocates, Family/Friends, Educators, Medical Professionals and DS organizations, continue to do their part to educate on how individuals with DS are just like everyone else, more similar than they are different, and how early intervention is key and extremely important. Some examples of early intervention would be Speech, Physical, and Occupational Therapy. Educating on how individuals with DS should be treated with respect and dignity is also important. Making people realize they are individuals who feel ALL emotions. With love and support from others, they are individuals who can do just about anything they set their mind on (just like everyone else). With this said, there is a lot more work that needs to be done to enlighten society about DS and what it entails. For the past eight years it has been our experience that we, along with the folks who work and care for someone with DS, need to keep in mind that having an extra chromosome can bring on challenges beyond their control at times. This is where patience and understanding are needed and the realization that individuals with DS are working harder than most of society while trying to navigate through this ever-changing world. In our opinion, individuals with DS exude courage and perseverance daily, hands down!
Our Chloe
Does Chloe know she has DS? Even though we have talked about her having DS, it still has not registered with her and that is OK. We know that Chloe realizes she needs extra support to complete tasks. The reason we know this is due to the times we see her get frustrated with a task or when she hesitates to do a task for fear of failing. When this occurs, we find providing positive feedback helps build up her confidence and gets her to try again. Praise and positive reinforcement are what motivates Chloe, along with French fries, and we love encouraging her and cheering her on to keep going and to not give up! We have gotten her to say, "I can, and I will", which she picked up fairly quickly.
Our Chloe, as mentioned before, is energetic. Her verbal communication continues to grow, and it is so wonderful to hear her use new words and phrases, like "seriously", "No Way, Jose", or "How was work?". She still has a great sense of humor, she loves to help with whatever we are doing, she loves riding in her daddy's truck, she loves to say, "tag your it", and she truly makes us laugh every day. She still loves watching movies, loves Chick-fil-A French fries, really loves Dairy Queen vanilla ice cream, and loves cheering for the University of Michigan, GO BLUE! She still loves to dance, sing, and boss us around. She is excellent at logging into our laptop and finding her favorite movies on Netflix or Amazon Prime. She is also a pro on our phones. She very much is routine-oriented, loves to read and to be read to, she really loves her dresses, purses, and pretend play. She still is the first person to say Hi! when approaching anyone. She is a future ambassador, for sure! She continues to help carry the offering basket at Mass and she is great at collecting the money.
She is attending her second year at The Notre Dame School of Dallas. On the school's website it states, "No Limits, Just Possibilities! Notre Dame School, recognizing that each person is created in the image of God, educates students with developmental disabilities and facilitates their integration into society." Chloe enjoys school, she loves her classmates, and her teachers. Check out their social media sites, and you may just see her posing with her friends. Here is the school's website, https://www.notredameschool.org/. Chloe still takes an adaptive ballet class with Texas Ballet Theatre, she continues to take Therapeutic Horse Back Riding with Equest, which she loves. She recently had her first track practice with a local Special Olympics track team. They signed her up for the 100-yard dash and the softball throw. She keeps us busy! She loves her big brother Christian and is always happy to see him and his girlfriend, Halie. We think she loves seeing Halie more, to be honest.
We have high expectations for Chloe, and we know she is going to do incredible things, just like she has been doing since the day she was born. We will continue to advocate for her and encourage her to be herself and to never give up, no matter what!
How can you help?
In honor of World Down Syndrome Day held on March 21st every year, as mentioned above, show your support and wear fun/colorful/mix-match socks, or whatever socks puts a smile on your face! Our family will be wearing our colorful socks, and we hope you all will too.
If you like, send us pictures of you rocking your socks, via email or by text to matildaayala@yahoo.com / 210-445-6515. We will use the pics in hopes of creating a video for Chloe.
Here are the links to 2022 and 2024 videos:
Thank you for reading and remember to Rock your Socks on March 21st!!
Love,
Matilda, Larry, Christian, & Sweet Chloe
Resources
Below are a few entertaining & enlightening videos/links to view that we love sharing:
- NOT SPECIAL NEEDS (an excellent video and we completely agree with the title!)
- NO DECISION WITHOUT US (video created by the CoorDown Group)
- Down syndrome answers